This qualitative research explores how stress and family practices can be expressed in everyday life in families living with epilepsy in children. The data collection consists of interviews with four parents. In a theoretical framework, consisting of perspectives related to stress and family practices, the parents’ reports are illuminated. A phenomenological analysis is used to answer the following research questions:
- Which stories are parents of children with epilepsy reporting about stress?
- How do these conditions affect the family’s relationships, practices and organization?
The parents report that epilepsy leads to unpredictability in everyday life. Seizures cannot be planned for, rarely be predicted and come and go to indefinite times. To always be prepared when seizures occur, parents are constantly living in alert. For some parents the seizures have become almost a normalized part of everyday life. The parents report about “thought stress”. This refers to conditions such as thoughts or worries in relation to the child’s future and transition from kindergarten to school, and the relationship to the welfare system. The dependency of the welfare systems is putting an additional burden on the parents when they are not being offered help, counselling and support.
The parents in this study highlight some specific ways on how they live their family life, as a consequence of their child’s epilepsy. The family practices are characterized by predictability for the child, carefully planning of the family’s activities, in addition to regular routines. Epilepsy can lead to limitations, and a need to divide the family in activities. Various assumptions for the child with epilepsy and siblings give parents different expectations and demand to the children. The parents´ individual needs are considered to be important, but difficult to prioritize in a hectic everyday life. Information and knowledge in the surroundings are of large impact to achieve an increased understanding of the child’s epilepsy. The parents inquire information and counselling in relation to the child’s epilepsy and conditions such as additional care needs.